View Full Version : Dizziness warped head for 9 months now
So this is my first post
I've scoured this forum for 9 months now so here goes. This will be an essay sorry!
Im 32 and just gave birth to my 3rd beautiful baby dec 28th 2012, normal delivery no drugs. Then in feb I was sitting in front of tv and bam! My head starting spinning, not the room, just my head. I went to hold onto the lounge and then it stopped. It was violent for only 10secs. Then began my nightmare for the last 9 months. I woke up the next day slightly lightheaded and that has continued since then. There hasn't been any vertigo since. Also i have NO balance issues. I can stand on one foot without flinching no probs. its just that i FEEL imbalanced if that makes sense? Mainly now it feels like I'm walking uphill like the room is slightly slanted and when I have to concentrate on people the room around me kind of warps. I have had no headaches at all
The dr said it was labyrinthitis. I'd had no virus or been sick and no ear symptoms except for very waxy ears that i need syringing sometimes and intermittent tinnitus but nothing that is excessive or concerning. Along the journey some STUPID IDIOT dr mentioned MS in passing and there began my absolute terror and health anxiety reared its ugly head. My normal dr who I've seen a few Times now says he's 100% sure it's not ms or anything serious and he put me on citalopram to cope with all the floaty boat motioned feelings I get 24/7. He also gave me a CT scan to (in his words) show me there is nothing serious wrong and hopefully relieve some anxiety. I said shouldn't u be sending me for an MRI but he's adamant I don't need one. He said these things take time and will go on their own. Being anxious slows down the brain compensating for the damage done to inner ear. So CT was of course clear. So I sit here today still with a floaty head, my brain swims in my skull, boat like movements on and off, lightheadedness, quick kind of dizzy jolts now and then and anxiety to top it off. Sometimes i liken the way im feeling to someone spiking my drink like im on some weird trip or drug, except im totally with it in my head. From all the reading I've done i tend to lean toward it being vestibular neuronitis. Funnily enough driving is great, it generally makes me feel better.
Yes I have to admit its not as bad as it was, it has ever so slightly improved but I'm not sure if its cause I've learnt to cope better thru the day or if its actually improved. I'm frightened its something bad, having something for 9 months straight would make anyone think that. The ms word I can't get out of my head. I know it's not a tumor. Im also frightened as i have read story after story that that some ppl with vestibular disturbances seem to have them forever. i cant live like this forever, I have 3 kids and hubby is in the navy so away a lot. I just want this to go away so I can be me again. Ive stopped socialising and avoid shopping. I'm becoming a recluse. I use to be so outgoing, social queen! Can anyone help me or reassure me or just give me some kind words of encouragement that this will all go? Im starting to lose hope xx
Hello there, welcome to the forum :)
I'm sorry that you've been going through a rough time!
Unfortunately, I know a lot about vertigo and balance issues lol. I've had a lot of problems of my own.
The best thing I can recommend to you, and maybe you've read about this already, is to seek out someone in your area who specialises in Vestibular Rehabilitation Therapy (VRT). It's a type of physio that focuses on the balance system. A VRT therapist will be able to asses your balance system and hopefully give you some idea of what's going on. They'll also be able to give you exercises to help.
I know you say that you have good balance, but your balance system is made up of many parts - so while you may be able to balance on one foot just fine, you may have issues with your gaze for example. The VRT therapist will be able to tell you more and it can be very helpful - there is definitely hope for you! :)
Some things to be aware of - if you're a jaw clencher or teeth ginder, or if you spend hours bent over looking at your phone/tablet/computer, then the muscle tension from these activites can really contribute to how off balance you are feeling. Just something worth thinking about.
Unfortunately GPs don't seem to know a huge amount about balance problems, and often chalk things down to anxiety when it's not the core issue! You might be better off asking for a referal to an ENT who can assess you for issues with your inner ear.
Thanks honeylove. I will look into VRT. It's been such a hard year with breastfeeding a baby and hubby away and 2 older kids to wrangle. Getting the time to go and focus on this has been almost non existent. Do you think it's anything serious from what I wrote? I know you can't diagnose but from what you know does it sound like something more than labs or VN?
I wish I knew enough to diagnose you, but unfortunately with balance issues it's not that easy as symptoms can overlap with many different problems - you really need a professional to assess you.
But from what you've described the symptoms really sound like a vestibular problem rather than anything like MS or a tumour.
So I sit here today still with a floaty head, my brain swims in my skull, boat like movements on and off, lightheadedness, quick kind of dizzy jolts now and then and anxiety to top it off. Sometimes i liken the way im feeling to someone spiking my drink like im on some weird trip or drug, except im totally with it in my head. From all the reading I've done i tend to lean toward it being vestibular neuronitis. Funnily enough driving is great, it generally makes me feel better.
This part in particular sounds like many of my own symptoms and those of dizzy people I've come across.
Also, with symptoms like these the posture/jaw clenching stuff is really a factor you should consider.
This website is an excellent one for balance resources, including a directory of VRT therapists or balance specialists around the world: http://vestibular.org/
Hi Mumofhjo
I've just replied to a similar thread posted by fedup earlier today. My story is very similar to yours though I'm now 20 years older and long since accepted this horrible symptom. It's 15 years since I had the scans and was reassured there was nothing sinister but it didn't stop me going into full panic mode every time I had one of those jolts you described. It's interesting you say you are okay driving. Don't you think that's because you are concentrating on something else? I agree with everything honey love says. The balance system is complicated but once something like this happens it's easy to spiral into panic and anxiety. I know because it happened to me and just like you it was out of the blue. It does occasionally still happen to me but again like you it lasts only a few seconds. I can so relate to you grabbing onto something to steady yourself because I've done that myself. Interestingly it has never happened while I'm stood up! If it happens now I just take a deep breath, wait for it to pass and carry on with what I was doing. It has taken years for me to accept that it's nothing to worry about. I wish there had been the available technology back then so I could have found a site like this to understand this is quite common.
I hope I've reassured you a bit. The ms worry took over my life for a while and I'd hate for anyone else to suffer unnecessarily.
Take care
Sal x
Sal I'm sorry you've been suffering for so long :(
If you just get brief periods of spinning vertigo that last a few seconds, then it sounds very like BPPV - has anyone ever talked to you about that?
Hey, I get these dizzy zaps as Sal said above...
I've had all the tests but all have come up clear...
I think anxiety and dizziness is strongly linked and you get stuck I'm a vicious circle...
MS was also mentioned to me but I've been given the all clear with this :)
Hi Honeylove
Thanks for your response. Yes the doctors did suggest BPPV on a very mild level and I had an appointment with a consultant (long time ago now). It wasn't considered serious enough to carry out any further treatment but they did say they would see me again if it got any worse. In all honesty it didn't get worse and once they had explained to me all about balance and crystals in the ear etc it made me understand what was happening and I think that in itself stopped the anxiety about it. I have found it easier to deal with and I can go months without any dizzy attacks. When it does happen now it's only for a few seconds so not really a problem anymore. I'm not saying I'm anxiety free. I do think that something like this can be a catalyst for problems down the line which is why I think it's important to tackle it early. For 90% of the time I am absolutely fine and many people would never know I have had a problem but that 10% is still there when I have unexplained and uncontrolable anxiety attacks that reduce me to a sleepless quivering wreck for a few days. Never caused by dizziness now but I put it down to my nervous system being sensitive to certain stresses. No idea what those triggers are. Who knows, but I'm still here despite what I thought 20 years ago! That's what I want to get across to Mumofhjo and Fedup36 - Don't let this worry take over your life.
Sal
Darbysa it does sound like you have a very good handle on it, and are able to control the anxiety that might revolve around it, so I guess you're in a good place with it.
If it ever does get too bad then I remember my VRT therapist saying that he can usually solve BPPV with one session, it's a particular set of exercises I think he does with the patient. I'm not sure that it would stop it from reoccurring though.
And yes, you're right about the fact that learning not be be afraid of the dizziness is a good thing to get across here. A bad as it makes you feel, you can still handle it and it won't harm you. The worst thing may be having to rethink your plans and live a gentler pace of life. It's a frustrating thing to have to live with, but it's possible to live with it without being consumed by anxiety.
It's hard work, but you can get there.
Thanks both :)
Well I thought right I'm going to beat this!! I needed to take a dress back to Asda and right in the middle of a panic I thought right that's it in going down there to challenge and tackle this head on! I did it, yes I got very dizzy and very sweaty but I did it and so happy :D
Already feeling a bit better... Like you said I need to realise that nothing will happen... I do think is my dizziness as bad as everyone else's but were all different! X
Nice work! :)
It will take time to get used to it, but you're already seeing that you can do it. It's just about learning what you can handle and taking things at a careful pace.
Well done Fedup! Small steps to success! You will get the better of this.
X
Thank you all, sorry I took over this post with good news rather than this dizziness stuff.
I suppose we have to realise that the dizziness won't harm us... It's easy to say that when you feel well but when you are experiencing the dizziness and panic it's hard to tell yourself nothing will happen...
How did you guys learn not to fear it? X
In glad I've got so many responses! I guess that's what I was needing. Ppl who understand and can offer a shoulder to lean on. It's such a debilitating condition to get a grip on. And it seems it mostly happens to quite healthy strong outgoing ppl. It's not that we are unhealthy, bad immune systems, or poor life style. That's what makes it even more debilitating as we are forced to stop our lives and slow down considerably when we have all this other health and strength going to waste. And there also stems the anxiety and depression.
I use to be so outgoing, out every weekend and I now find even going for a drink a struggle! It's unbelievable how it can affect you! I hope you start to feel better x
It's definitely good to have support and talk with people who experience the same stuff. We could use this thread to keep in touch about experiences if you guys would like to :)
Hi, how are you all feeling today?
I am not doing great unfortunately :( I feel really woozy today although managed to have a shower standing up this morning which is an achievement... for some reason standing up in the shower sets me off! I think its the curved edges and the different texture.
I managed to get out of the office at lunch and went to the post office which involved standing in a queue and did that! But when I was driving back I just went all weird and felt like I was floating...
Normally driving is good for me but didn't feel like that today, I've got back to the office and just feel weird... my chest is tight and my eyes keep going in and out of focus..
I think if I felt solely the dizziness then I might be ok, its just the fact that I get other symptoms to and then I start to panic which is what I think i'm doing now..
I feel like ive tried to challenge myself and get on with it but im still feeling odd and not very well :(
I know what you mean - if it was just dizziness it would be more managable, but the fact that it come with all the other odd stuff is just frustrating!
I find the shower tough sometimes too, because of moving my head around while washing my hair and stuff. And visually, there's a big mirror behind my shower which I used to keep frightening myself with when my peripherial vision got really sensitive - suddenly I was seeing more than usual, and that included catching glimpses of myself in the shower when I wasn't used to it, used to frighten the heart out of me lol
One thing that I find difficult is bending down to look under my bed for shoes. I know you're thinking why don't I put my shoes somewhere else? Honeylove this will be more evidence to you that I should look more at the BPPV thing!
Fedup, I'm sorry you've had such a bad day after your success yesterday but don't be so hard on yourself. Getting out and about to do those things is an achievement in itself given you were feeling so bad earlier yesterday. I think that the tight chest and focus thing is probably due to anxiety that you weren't expecting. I know that has happened to me before. It's disappointing when it happens but there's no overnight magic cure. Try to concentrate on the good things you do and don't feel too bad when your challenges don't work out as expected.
X
Thank you :)
I'm feeling ok! I managed to stay late at work :)
I'm dizzy now but I am tiered and had a stressful day so that's why!
All I want to do is lye down big that makes my dizziness worse!!
I'm sure I will get there...
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